Thursday, October 10, 2013

At full feeds but feeling puny :(

Well the good news is, we are up to full feeds of 56ml/hr and he's doing great with that so far! His g-tube is still racked, and will have to be for another week or so, then we can work on condensing feeds into boluses.

We were hoping to be home-free today, but Clay's coughing is worrying me. He coughs and hacks and coughs and hacks, turns blue and breaks out in a clammy-sweat...I suction and suction and give saline drops and do breathing treatments. Once he's over the coughing fit, he'll huff and puff and retract and just flat out looks like he's struggling. He's been on 26% oxygen since surgery--which hasn't been totally necessary until lately. We had to bump him up to 35% this morning and he's still hanging out in the low 90's. His heart rate has been elevated over the past couple of days, too. Something's just not right. But we had chest x-rays done yesterday and they looked fine. He hasn't had a fever, either. It's just so frustrating not knowing what is causing all this and so pitiful to see him so puny. If it is something viral, something that may be lingering from our rubber-ducky incident--the cough has been lingering since then, but it's obviously taking more of a toll on him now--if it is something like that, then I'm perfectly fine with taking him home and setting up our Clay-ICU again. I'd rather have him home, where he can rest and be more comfortable...I just don't want to take him home and have to come right back! So, we will be here for another day or two until we get something figured out.

Y'all say a prayer for my lil man. This never gets any easier :(

Saturday, October 5, 2013

Wake up, Clay belly!

Praying for poop...that's what we've been doing since surgery. He finally had a decent bowel movement tonight, nothing huge, but's a start! And it was without the help of a suppository so that's good he did it all on his own.

Poor little bug has been pretty uncomfortable, both with post-op pain and his bloated-ness. His belly has been distended and so tight, he looks like a lil pot belly piggy. A very cute pot belly piggy, of course ;)

Since his bowels haven't quite awoke from surgery, we haven't been able to start feedings :( He started getting some nutrients through is IV yesterday, but that's just not the same as tummy feeds... We've actually had to drain his g-tube constantly, so that all his gastric juices and air can escape, because otherwise he wretches and is extremely uncomfortable. We've tried to rack his g-tube a couple of times, which is when we attach a 60ml syringe (sans plunger) to his feeding tube extension and suspend it above him. With this, air can escape but gastric juices stay down. Both times we've tried this, he's not tolerated it so we put it back to drain. We don't want him wretching or gagging because we want his new Nissen wrap to stay intact. Surgery team isn't concerned with his sleepy belly right now...they say sometimes these things take a while. So, we wait.

He also had a touch of a fever tonight, 99.5..and he's sounding a bit wheezy in his lungs, and he's been retracting a bit when he breathes--which could be because of his overfilled belly. I'm really hoping things aren't settling down in his lungs; his cough has been a little weak because it really hurts him to cough. Poor fella, that's the last thing we need right now.

He has perked up a bit over the past couple of days... he's felt like sitting up in bed and is enjoying reading his books again..we took a lil wagon ride through the halls yesterday too. He's not back to his silly, smiley self yet, but we'll get there.

Handsome man.
Gettin lots of momma lovins...I think we're both tired of hospital living :/

Thank you all--for the millionth time--for your prayers & love & concerns for our baby. Lots of love & blessings to you all! Xoxoxoxo!

Wednesday, October 2, 2013

Recovery days.

Things have actually worked out better than expected this time around...very unusual for us! ha!

We had surgery yesterday morning; they took Clay to the OR around 11am and he was out and in the PICU around 3pm. Dr. Draus had great news for us in consultation afterwards. It turns out, his diaphragm is still intact--no hernias anywhere! Thank goodness! The reason his x-rays look like his stomach was misplaced is because the diaphragm is a bit loose on the left side. Dr. Draus decided not to tack it down or tighten it or anything because Clay has been doing so well breathing as it is, so why mess with it, right?

Dr. Draus was able to get a really good look at his handy-work and was really pleased with how well tissue has formed around the previous patching jobs. He said that he could see liver & spleen acting as a barrier between bowel & diaphragm, so it looked like bowel would have a hard time slipping up through the diaphragm even if it wanted to. Good news!

So, the diaphragm didn't need repairing after all...and we're hoping the loose-ness of it will allow for more room for Clay to grow & another repair won't be necessary for a long, long time!

The Nissen Fundoplication was done to prevent the frequent pukies that Clay was having. The Nissen wrap is a crazy concept that I have a hard time wrapping my head around, but a picture helps:

Illustration showing Nissen fundoplication
The stomach is wrapped around the esophagus and then sewn to itself to reinforce the esophageal sphincter, the muscle that keeps food & acids from backing back up into the esophagus. From what I understand, Clay will not be able to puke at all now...which I think is both a good and bad thing. Good, because maybe we can put some weight on his scrawny-tail...Bad, because even if he has a stomach bug, he won't be able to puke and sometimes puking just makes you feel better. But, puking numerous times a day everyday IS awful and since that's the situation we were in, I think the good overrides the bad.

Dr. Draus said he had to use a good portion of his stomach to wrap around the esophagus; so it will take a while for his stomach to be able to hold large amounts of food--he will have to be on a slow drip for a while. Hopefully we can start feeds in the morning.

Other than the Nissen, Clay also had a central line placed--a more permanent IV port for meds and fluids. Eric & I requested this so we could spare him from being poked so much. He is such a hard stick and poor guy had already been poked over 10 times during this little hospital stay...and it's fishing for veins almost everytime. That's just torture! We'll have that central line pulled before we leave for home, no big deal.

Clay also had his appendix removed while in surgery; Draus said it was there and in plain sight, so he just went ahead and took it Now we won't have to worry about appendicitis, I guess!

Today has been a pretty rough day of recovery. Clay's been awfully sore, but is being such a trooper. He only fusses when he coughs. Poor guy, it's a bad time to have a cough. He has only smiled a few times today so that's a good indicator he's feeling rough. I can't imagine after being cut open and having your innards rearranged I'd feel like smiling either! Hoping tomorrow will be much better for him.

I cannot thank you all enough, for your well wishes and love and prayers. The power of prayer and positive thoughts is an amazing thing! We are so, SO blessed. Seriously, we have the best people in our lives. I cannot imagine going through this without all the love and support we've felt...from the visits, to the meals, from the calls & messages, to the likes and shares and comments on Facebook.. They all really do mean a lot to me. I hope I can pay it forward one day. You all are the best <3

Lots of love & peace to you all, dear friends... Xoxoxoxo!